By Bernard CooperSimon & Schuster
By Gail SheehyWilliam Morrow
By Jane GrossKnopf
Recently, a colleague at my radio station asked me, in the most cursory way, as we were waiting for the coffee to finish brewing, how I was. To my surprise, in a motion as automatic as the reflex of a mussel being poked, my body bent double and I heard myself screaming:
“I WAAAAAAAANT MY FATHERRRRRR TO DIEEEEE!!!”
Startled, and subtly stepping back to put a bit more distance between us, my co-worker asked what I meant.
“What I mean, Rob, is that even if, while howling like a banshee, I tore my 91-year-old father limb from limb with my own hands in the town square, I believe no jury of my peers would convict me. Indeed, if they knew all the facts, I believe any group of sensible, sane individuals would actually roll up their shirtsleeves and pitch in.”
As I hyperventilated over the coffeemaker, scattering Splenda packets and trying to unclaw my curled fingers, I realized it had finally happened: at 49, I had become a Kafka character. I am thinking of “The Judgment,” in which the protagonist’s supposedly old and frail father suddenly kicks off his bedclothes with surprisingly energetic—even girlish—legs and, standing ghoulishly tall in the bed, delivers a speech so horrifying, so unexpected, and so perfectly calculated to destroy his son’s spirit that his son—who until this point has been having a rather pleasant day writing a letter to a friend, amidst a not unpleasant year marked by continuing financial prosperity and a propitious engagement to a well-placed young woman—immediately jumps off a bridge.
The Elder Chronicles
Stories about aging and caretaking at TheAtlantic.com’s Health channel
Clearly, my nonagenarian father and I have what have come to be known as “issues,” which I will enumerate shortly. By way of introduction, however, let us begin by considering A Bittersweet Season, by Jane Gross. A journalist for 29 years at The New York Times and the founder of a Times blog called The New Old Age, Gross is hardly Kafkaesque. An ultra-responsible daughter given to drawing up to-do lists for caregivers and pre-loosening caps on Snapple bottles, Gross undertook the care of her mother in as professional a way as possible. She was on call for emergencies and planned three steps ahead by consulting personally with each medical specialist. Like the typical U.S. family caregiver for an elder (who is, statistics suggest, a woman of about 50), Gross worked full-time, but (atypically) she was unencumbered by spouse or children. She had the help, too, of her child-free brother, a calm, clear-headed sort given to greeting his sister with a quiet, reassuring “The eagle has landed.” What could go wrong?
Plenty. As Gross herself flatly describes it, in her introduction:
In the space of three years … my mother’s ferocious independence gave way to utter reliance on her two adult children. Garden-variety aches and pains became major health problems; halfhearted attention no longer sufficed, and managing her needs from afar became impossible … We were flattened by the enormous demands on our time, energy, and bank accounts; the disruption to our professional and personal lives; the fear that our time in this parallel universe would never end and the guilt for wishing that it would … We knew nothing about Medicaid spend-downs, in-hospital versus out-of-hospital “do not resuscitate” orders, Hoyer lifts, motorized wheelchairs, or assistive devices for people who can neither speak nor type. We knew nothing about “pre-need consultants,” who handle advance payment for the funerals of people who aren’t dead yet, or “feeders,” whose job it is to spoon pureed food into the mouths of men and women who can no longer hold a utensil.
However ghoulish, it is a world we will all soon get to know well, argues Gross: owing to medical advancements, cancer deaths now peak at age 65 and kill off just 20 percent of older Americans, while deaths due to organ failure peak at about 75 and kill off just another 25 percent, so the norm for seniors is becoming a long, drawn-out death after 85, requiring ever-increasing assistance for such simple daily activities as eating, bathing, and moving.
This is currently the case for approximately 40 percent of Americans older than 85, the country’s fastest-growing demographic, which is projected to more than double by 2035, from about 5 million to 11.5 million. And at that point, here comes the next wave—77 million of the youngest Baby Boomers will be turning 70.
Quick back-of-the-envelope calculation, for Baby Boomers currently shepherding the Greatest Generation to their final reward? Hope your aged parents have at least half a million dollars apiece in the bank, because if they are anything like Mama Gross, their care until death will absorb every penny. To which an anxious (let’s say 49-year-old) daughter might respond: But what about long-term-care insurance? In fact, Gross’s own mother had purchased it, and while it paid for some things, the sum was a pittance compared with a final family outlay of several hundred thousand dollars. But how about what everyone says about “spending down” in order to qualify for Medicare, Medicaid, Medi-Cal, or, ahwhich exactly is it?
Unfortunately, those hoping for a kind of Eldercare for Dummies will get no easy answers from A Bittersweet Season. Chides Gross: “Medicaid is a confusing and potentially boring subject, depending on how you feel about numbers and abstruse government policy, but it’s essential for you to understand.” Duly noted—so I read the relevant section several times and … I still don’t understand. All I can tell you is that the Medicaid mess has to do with some leftover historical quirks of the Johnson administration, colliding with today’s much longer life expectancies, colliding with a host of federal and state regulations that intertwine with each other in such a calcified snarl that by contrast—in a notion I never thought I’d utter—public education looks hopeful. Think of the Hoyer lift that can be delivered but never repaired, or the feeder who will not push, or the pusher who will not feed.
But it gets worse. Like an unnaturally iridescent convalescent-home maraschino cherry atop this Sisyphean slag heap of woe, what actually appears to take the greatest toll on caregivers is the sheer emotional burden of this (formless, thankless, seemingly endless) project. For one thing, unresolved family dynamics will probably begin to play out: “Every study I have seen on the subject of adult children as caregivers finds the greatest source of stress, by far, to be not the ailing parent but sibling disagreements,” Gross writes. Further, experts concur, “the daughter track is, by a wide margin, harder than the mommy track, emotionally and practically, because it has no happy ending and such an erratic and unpredictable course.” Gross notes, I think quite rightly, that however put-upon working parents feel (and we do keeningly complain, don’t we—oh the baby-proofing! oh the breast-pumping! oh the day care!), we can at least plan employment breaks around such relative foreseeables as pregnancy, the school year, and holidays. By contrast, ailing seniors trigger crises at random—falls in the bathroom, trips to the emergency room, episodes of wandering and forgetting and getting lost. Wearied at times by the loneliness of the daughter track, Gross writes, in a rare moment of black humor:
I know that at the end of my mother’s life I felt isolated in my plight, especially compared to colleagues being feted with showers and welcomed back to work with oohs and aahs at new baby pictures. I was tempted, out of pure small-mindedness, to put on my desk a photo of my mother, slumped in her wheelchair.
Those seeking a more hopeful take on this bittersweet season might turn, for momentary comparison, to Passages in Caregiving, by Gail Sheehy. Reading Sheehy is always a boost—even when she’s rewriting some Passage she predicted 10 or 20 or 30 years ago, as is necessarily (and, given our ever-increasing life spans, probably will continue to be necessarily) the case. From her intro (as swingingly nostalgic—isn’t it, almost?—as Burt Bacharach):
In my books and speeches since 1995, when I published New Passages [the first update of the original Passages], I keep predicting liberation ahead—the advent of a Second Adulthood, starting in one’s midforties and fifties. At that proud age, having checked off most “shoulds,” people generally feel a new sense of mastery. Haven’t you done your best to please your parents, your mentor, your boss, and your mate, and now it’s time for you? The children are making test flights on their way to piloting solo. Your parents have become giddy globe-trotters, piling up frequent-flier miles and e-mailing playful photos of themselves riding camels … Now you can finally earn that degree, start your own business, run for office, master another language, invent something, or write that book you keep mulling.
Ominous new paragraph—to reflect tire-screeching 21st-century update:
Then you get The Call.
In Sheehy’s case, The Call was a cancer diagnosis for her husband, Clay Felker, which kicked off an almost two-decade period of medical battles before his death (which was actually not, in the end, from cancer). Although Sheehy offers her book as an umbrella guide for all caregivers, weaving her personal experience together with a demographically wide range of case studies, it strikes this caregiver as less than universal. For one thing—and in fact this is a tribute to how engagingly Sheehy tells her story—even with a tube in his stomach (for which sympathetic chefs blended gourmet food at Paris bistros, whereupon he continued to charm dinner guests as usual in his handsome navy-blue blazer), Clay Felker, on the page anyway, is still pretty great company. And then, to further vanquish the blues, Sheehy and Felker rented a houseboat, spent the summer in France … (How is it that, no matter what, Boomers always seem to be having more fun?)